“Show me that you care.”

- By Pouruchisti Wadia, Associate Programme Director, Romila Palliative Care and Nurse Aide (SNEHA)

It’s been almost a year and a half since my first blog series on my learnings in palliative care¹. I am excited to be writing again, and more so because this next two-part blog series touches upon an important component of my own role, FUNDRAISING!

To begin on a positive note, I want to assure you that his blog isn’t going to talk about our challenges at all. Wait a minute, did you think it would be easy with all our tear-jerker stories and our impact on the quality of life of our patients and their caregivers?          

Palliative care is provided by a multi-disciplinary team of highly skilled and educated professionals. Thus, our budget is typically highly human resource intensive.  As a donor, you may wonder why you should pay for professionals' salaries and their travel for home-based care when you could directly support a poor patient in getting treatment and a cure. Besides, our patients are going to die anyway!

I fully acknowledge families' struggle to provide the best possible treatment for their near and dear ones.  Some options they have, include crowdfunding and some trusts who support (to some extent).  Mahatma Jyotiba Phule Jan Arogya Yojana (previously known as the Rajiv Gandhi Jeevandayee Arogya Yojana) is also being implemented to provide financial support for severe illnesses. Organisations like ours that provide palliative care and deal with total pain also have some funding to support socio-economic needs. But as you are now aware (presuming you have read all my past blogs eons ago), curative treatment alone is not adequate and what happens to those for whom treatment is no longer possible?

Clearly, funding palliative care initiatives does not allow you to see measurable/ quantifiable outcomes like reduced malnutrition, maternal mortality etc., but has a person with a loved one suffering from a life-limiting illness ever shared their experiences with you, or for that matter, anyone fortunate to receive palliative care? All the patient and the family need is someone to listen and believe they are being cared for even though treatment is minimal or stopped altogether.

So whom does the palliative care team required to be funded consist of? Firstly, a doctor who, after all his training, goes house to house in all weathers and even into vulnerable slum communities instead of sitting in an air-conditioned clinic or hospital. A doctor who believes in the aphorism “To cure sometimes, to relieve often, to comfort always”². A doctor tries his or her best to ensure that the patient is without pain or suffering.

Secondly, a highly skilled nurse who decides to be there for you, maybe, teach you how to remove maggots, among other things, organise an air mattress, understand you and your family close and be available emotionally instead of just seeing you during his/her shift, taking vitals etc. and giving a sponge bath. In short, a nurse who ensures you can care for your patient confidently at home and manage everything independently without being scared and rushing to a hospital.  

A counsellor who, besides dealing with the psycho-social and spiritual pain of the patient and the family, is specially trained to deal with complex issues like collusion and many different forms of loss. She/he sees death often and closely and continues to do bereavement counselling until the caregiver is ready to return to this world. More than ever, she needs to keep consciously working on self-care to ensure that he/she does not suffer burnout.  

Finally, the team includes a social worker who helps provide socio-economic support, a nutritionist looking into their special dietary needs, and a physiotherapist/occupational therapist to ensure optimal functionality. This multidisciplinary team works together to make a difference in their quality of life that only that family can vouch for. Hearing from one of our patient’s daughters that “Mom was just so happy that someone was specially coming to look after her and know how she was doing” helps reinforce the power of palliative care.    

Now you know it’s not just “someone” coming to do the home visit.  It’s a team of highly skilled people communicating effectively to make a difference.  Last but not least, when you fund a palliative care team,, you support many patients and caregivers and provide them tender loving care instead of curing one patient at a time.

¹ Palliative care (derived from the Latin root palliare, or 'to cloak') is an interdisciplinary medical caregiving approach to optimise the quality of life and mitigate suffering among people with serious, complex, and often terminal illnesses.

² Originated in the 1800s with Dr Edward Trudeau, founder of a tuberculosis sanatorium.